Just an update and a moan. After months of feeling like rubbish with shortness of breath (more like having to breath harder rather than out of breath) and aches and pains, I had a ct scan which showed 'subtle ground glass oppacities' resp specialist not to concerned said it's sensitivity pneumonitis, (I'm not convinced) Iv been having upper back and neck aches for a while but now it's unbearable at times, I wake up in the morning and feel like Iv been lifting heavy weights, im on second week of pred once I take it in the morning it helps but by the afternoon/ evening I'm in pain again, My neck hurts to chew my food, as soon as I lie in bed I'm in pain!! Has anyone had/ have any symptoms like this, I feel like each week I'm getting worse I'm to cut down to half pred tomorrow and I'm scared it's going to get worse, Iv been to my GP and said nothing can be done until my next resp appointment in feb but she's referred me to a ruhemotolisgist. I feel like when my breathing isn't great that I'm breathing with my upper chest and neck muscles but surely it couldn't course this much pain? Sorry for the long winded doom and gloom post I'm just so fed up without answers and feeling worse as the weeks pass
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Bless you Tinkz it must be terrible to be in such pain. Do you take stronger pain killers? Also seeing a rheumy doc could help as l have osteo arthritis which can be painful. It could be affecting you too. Your doctor could be more helpful though.
Sending love and gentle hugs to you snd hope you find some relief soon. Xxxxxxx
Don't want to make you feel worse but it sounds to me like another problem. The symptoms you explain sound just like mine. I have suffered with Fibromyalgia for about 10 years pain affects muscles as we have muscles everywhere, so is the pain. I have chest pain arms, legs, hands, feet, shoulders etc. and also jaw. Feels like toothache but no reason can be found, it has been known for Fibromyalgia sufferers to have unnecessary dental treatment. I attended rheumatoid clinic, it's where gp sends you when first diagnosed, but no amount of steroid injections, hands, feet, shoulders has helped. I'm afraid it's another chronic disease that you have to live with. I have Tramadol , paracetamol for pain, Amitriptyline to help me sleep but nothing really helps. Severe pain can just start anywhere, stay in one place for weeks, then moves to somewhere else. It affects mobility, memory, sleep etc. difficult to understand why, medical professionals don't have any answers. I have Bronchiectasis, asthma, kidney disease also. Sometimes difficult to know which condition is causing the pain. Sorry to go on a bit, but it had taken 7 years to sort it out, so don't give up! X
Hi , I also have fybromyalgia and it took years to get a combination of medication that gave me some quality of life , i have had fybromyalgia for 15 years , i have asthma and now this hypersensitive pnemontic its a nightmare, im now on home oxygen as well this is just new and it is taking a bit of getting used to . But everything is trial in error to get something that works for you. What works for one doesn't always work for someone else , keep going good luck. x
Hi , tinkz, I also was told i have hypersensitive pnemontic but I'm not convinced my consultant said that he showed my CT scan to two other radiographers and they he said that they came up with 3 diagnosis but without a byopsi they are not a hundted percent but how ever the treatment is apparently the same for all 3 conditions , i also find that prednisone helps bettet than the mycrpheolate which is what I am taking for what I call the white thing on my lungs as that how i saw it when my consultant showed me it , im luck to have a good Gp and consultant at the hospital as it was my consultant who thought that there was something other than asthma and he done further investigation and came up with the pnemontic . i have fybromyalgia as well so have cocktail of medication some to counter act others .
Hopefully when you see the rheumatologist you will get some answers and medication that helps your pain , good luck.
Thank you Lorain, I'm sorry your suffering similar, not knowing what is going on is scary. How long ago where you diagnosed with the S.P ? do they think whatever is is will resolve?
Morning Tinkz. So sorry you're in so much pain. I have exactly the same symptoms that you describe and I have osteoarthritis and fibromyalgia, but that doesn't mean to say that you have! It could be something really simple, and I'm sure that they'll sort you out at your rheumatology appointment. I have one of those neck wraps that you put in the microwave. I find that heat does help, and gentle massage (if you can cope with it). Also gentle neck exercises. Tension and anxiety definitely won't help.
I am so sorry that you are so unwell and without answers as to why. Breathing difficulties are bad enough without having to contend with further complications. I do hope they soon find out what your symptoms are and that you will get more help with it.x
Sorry to hear you're in so much pain Tinkz. My sister has had similar symptoms to you (without the lungs stuff) and was diagnosed with Polymyalgia. She's been treated with steroids which have helped but gradually as they've been reduced the pain is beginning to come back. Not sure if that is helpful or not but perhaps something to query with doctors along with Fibromyalgia as others have suggested it could be. Hope you get it sorted out soon, take care x
Have they looked at your diaphragm? The reason I ask is I have a right side paralysed Diaphragm and that means I tend to breath upper chest more and you do use the neck and shoulder muscles to get more air in. Because these are being used in a different way it can cause this pain (at least it did with me)? What work have you done that could mean dusty environment?
Hi off cut I have thought of that as when I stand up all my breathing seems to come from my back, I don't know if I'm just over thinking my breathing as I seem to focus on every breath. But when I lye down I can consontrate and use my diaphragm. Although when I lye on my side especially left it's so uncomfortable and my stomach constantly rumbles/pops every. Breath I take as if something's might be getting squashed (sorry I know that sounds so strange 😂) what did cause your diaphragm paralysis? No dusty inviroment to cause this
I or the doctors have no idea why it went like it did. But I did find swimming near on impossible 2 years previous to finding out. It can be caused by needles taking samples from the lung and traumer commonly.
When I had my spirometry test at hospital I had one in the plastic box and one flat on a bed and I drop a further 12% when flat. I have to be carefull if I have a test that needs me flat as I have walked into many walls once I get up and leave
Thank you all for your kind words and advice. I have thought about fibromyalgia before but other than my back/neck occasionally buttox I don't seem to get pains anywhere else, it's more around the upper back of my ribcage and neck, maybe it could be but I wonder if whatever is going on in my lungs could be causing it seen as it's in that area. Heat does help me too I'm forever having hot showers for some relieve. If I lye on my sides it's so uncomfortable as if everything is being squashed if that makes sense. It seems a lot of you have had a long time for answers, how frustrating. Do any time of painkillers help?
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